+100

Today is a HUGE milestone for transplant survivors.  In a way, today my transplant survivor status is official.  It's Day +100!!!!!

I can drive.  I can prepare food.  I can change diapers.  I can be in my home without adult supervision of any kind.

My post transplant scans all came back clear which was pretty anti-climactic.  We knew they would be.  I just can't get myself to feel much of anything about it because right now I can't get past the fact that my remission can be taken from me at any time.  I'm trying to focus on the positive and there is SO much of that in my life.

I'm learning that when it is most important for you to be optimistic, it's also the hardest to be optimistic.  So, in honor of reaching the +100 milestone with Bone Marrow that functions pretty darn well and without being re-hospitalized one single time, I present you with a list of positive thoughts:

• There is no reasonable explanation for why I made it 100 days without having a single fever.  I had to go to the hospital 4 times during my first line treatment to have blood cultures done because I had a fever.  I went into labor with Avery because of a fever.  Somehow, this time when my immune system was WAY WAY WAY more compromised to the extent that I as not allowed to handle dirty laundry...not one single extra trip to the hospital.  In a house with 6 small children where the baby plays in the toilet, the garbage, and plays "Ice Bucket Challenge" with the dog's water bowl.  In a house with a potty training 3 year old boy.  That's crazy, and that's pretty awesome.

• My husband is such a hard worker and such a super smart man that he was able to provide not only the medical care that I required but also Nannies 4 days a week so that I would be able to follow all my post transplant restrictions in a house with 6 kids who are home all day.  

• I live in a town and a time where I have access to world class healthcare a short 20 minute drive from my home.

• We are surrounded by friends and family who have supported us from the very beginning of this ordeal.

• I get to go back to Pilates tonight and get back to swimming my laps this week.

• My hair is really coming in and my eyebrows have come in so well that I have to pluck the ones that step out of line.  100 days ago I was completely cueball bald and had about 9 eyebrow hairs total and no eyelashes at all.

• Regardless of the what the future may hold, I have this time with my family, right now.

There's a thing among transplant survivors where you post a picture of yourself on Day +100 so here it is, from my grainy cellphone camera, taken by my son Owen:

Hair: check.  Eyebrows: check  Eyelashes: check  Functioning Bone Marrow: check

Thank you everyone for your prayers, love, and support as I continue to walk this crazy cancer road!  Day +100 is not what I thought it might be, but it's still pretty darn good.

14 Days, 26.2 Miles, and 35 years

So...this is awkward.

I've been hiding from you which is not very nice considering how kind you all are to me.  The short version of why is that:

a.  cognitive function not in the crapper anymore but mostly at capacity with daily life
b.  living with my husband and kids again
c.  the longer I wait to write the weirder it feels to start up again

I was also approached to do an awareness post in September and I had a big mental panic attack because I'm SUPER conflicted about disease related awareness and so I just went into a mental bunker to hide from the whole thing.  Then I felt guilty that I didn't do it.  Then I felt guilty I didn't do awareness posts for ALL THE CANCER!!!  Now I decided to put on my big girl pants and give my adoring public what they want...half baked ramblings and haphazard punctuation.

14 days until Day +100

Today is exactly 14 days until I'm 100 days past transplant.  Starting day +100 I'll be allowed to do all kinds of things like drive, change diapers, handle raw food, and handle dirty laundry again.  I've already signed up for my first volunteer shifts at the kids' schoolish.  I cannot wait.  My recovery has been slow but steady.  My germ fighters (ANC) were fluctuating quite a bit for a while and I was having to get weekly growth factor shots.  I finally stopped the shots 2 weeks ago and had a pretty good count so hopefully that will continue.  My platelets and hemoglobin are good which is really nice, they're usually the last to come up.  Waiting for your blood to accomplish things is weird.  You feel like there is something you should do but other than eat and be active you're pretty powerless (really cruncheroos, sorry).  When it comes to germ fighters you're totally in the dark about whether you're improving or not, I've never been symptomatic (bleeding nose or gums) when my platelets were low, but oh my goodness, I could predict pretty accurately where I was on the scale for hemoglobin just based on how I felt.  My hemoglobin is on the low end of normal right now so I'm feeling great.  

I'm starting the re-staging process this week.  CT Scans on Friday and then next week PET scan, cardio/pulmonary test and DEXA scan to see how my bones weathered this storm.  My guess is my bones are fine because they have me on enough Calcium to cure a horse with osteoporosis.  

26.2 Miles for The Leukemia and Lymphoma Society

Yesterday, my best friend from middle school and dear friend for life, Dr. Joelle Taylor, finished the New York City Marathon in 4 hours, 19 minutes, and 49 seconds.  In the process of preparing for this incredible accomplishment she raised $4,655 for The Leukemia and Lymphoma Society.  She ran in my honor and I am deeply humbled and grateful.  Joelle, I am so proud of you and I am so grateful for your love and friendship!

35 years

On October 25th, I turned 35. 

 Remember in elementary school when you learned to round to the nearest 10?  5 or more in the ones place and you round up?  Well, Michael is 3 years older than me and so I've mercilessly teased him since he was 25 about "rounding up".  It went something like this..."You're so OLD, you're not 25 you're really 30!  You have a wife and a house and your age ends in 5 so round up!"  Super funny Nella.  That used to seem like a funny joke when we were dumb kids.  So anyway, we've been teasing each other in this manner for a long time.  

This year Michael gave me the old speech about rounding up (haha!  You're really 40!) and I realized that while it's not a guarantee, statistically there's a decent chance that rounding up is the closest I'll ever get to 40.  My chances for surviving the transplant were good, but the truth is that my chances of surviving this cancer for 5 years are not the kind of odds that make you feel awesome about the future. 

It's weird how our mind boxes things up without us really knowing.  After I found out that I had relapsed and went through the initial whirlwind, my mind became very focused on the task at hand and not on my prognosis.  As each step of treatment intensified I became more and more consumed with the tangible steps in front of me.  In the last few weeks as I've felt more and more healthy and my recovery from treatment has become less and less of a full time job, my mind has opened a door that looks like this:

Fancy bloggers with discipline would have photoshopped this to read:  "Don't Open, Cancer Inside"

One day a few weeks ago all of these really scary statistics that my mind had cordoned off behind yellow tape and razor wire were released back into my thought stream.  Now that I've survived the transplant process I'm back to thinking about cancer.  That may seem weird because how could you be at a cancer hospital and not think about cancer, but to get through something like the transplant process I really needed to focus only on that and not on the actual cancer stuff.  

I can't hide from the truth anymore, which is that the chance that I'll still be around and Lymphoma free in 5 years is 50%.  50% is actually being a little generous based on how quickly I relapsed last time and some other factors.  That's a lot of reality to deal with.  Truth is, sometimes I'm ok with that and sometimes I'm just not.  

Please do not mistake this for not having a positive attitude.  I've realized  through this that many people think that a positive attitude is some kind of magic spell that makes everything just work out.  I'm here to tell you that that is not why a positive attitude helps you when you're sick.  A positive attitude doesn't have much control over whether or not cancer grows in your body.  What a positive attitude does is makes you swallow your pills when you don't feel like it and you're tempted to think "What difference does it make?".  It makes you get out of bed and get dressed and go to the hospital when you feel like you just can't face that place again.  A positive attitude makes you keep moving when it's just so hard.  A positive attitude doesn't involve avoiding reality.

Michael and I have adopted a policy of "expect the best and plan for the worst".  We've started researching the most commonly used treatments for 3rd time relapsers and evaluating clinical trials.  I already have a list of questions for when I return to my Lymphoma Oncologist at day +100.  I may still have some treatment to go, even if my scans are clear, which they should be.  

I can't be positive that I'll make it to 40 because I know about math, but I can be positive I'll fight like crazy to get there.  

Getting old is the best thing that could ever happen to me.

Day +13: Sometimes You Just Cry

*The management makes no promises for coherence, grammar, or punctuation.


I'm kind of a crier.  I cry a lot.  Happy, sad, mad, relieved, undecided....cry, cry, cry, cry, cry.  I cry enough over random stuff that now if my 10 year old son finds me crying about something and I start to tell him not to worry he kind of rolls his eyes and says "I know, Mom, sometime ladies just cry."

In the car, when there is ANY country music playing except Luke Bryan, if I see a really great bird, almost EVERY time I see my husband,  if I think one year--sometimes one month ahead in my children's lives.....etc.

I try really hard at the hospital to not cry at all.  I try very hard to be super special patient that causes zero trouble.  I say thank you for every pill, every IV pump reset and I say sorry for every single gross thing such as puking.  I apologize between pukes as though they'd assume it's my hobby and I just decided to fit in some recreational puking right now and I regret I've inconvenienced them with my poor timing. I need them to know I did not want to cause puke for them to handle.  I wish I had a stack of $5 bills on my tray to hand out every time I have to push the call button.  I HATE pushing the call button. I basically only push the call button when my IV is beeping because I know if I let it go they'll say "why'd you do that".  Anyway, I try to be sunshiney patient in their day and yesterday I was an epic fail.

Yesterday was day +12, or 12 days since my transplant.  I cried all day yesterday.  All. day. long.  Did I get some bad news?  Nope. Great news.  Yesterday was the day my Absolute Neutrophil Count was almost where it needed to be for us to tentatively maybe discuss, barring any unforeseen bumps in the road, the possibility of me being discharged at some point.  Possibly.  (It's hard for doctors to commit to anything). Today the news was even better.  My Absolute Neutrophil count needed to be greater than 1.5 and it's 1.76.  They're giving me one more growth factor shot to keep things jumping up and hopefully  after today I'll get a break from them.  They make me very achy.  I might even get unhooked from my IV's tomorrow.  It's awesome.  I might even go home sometime next week.

But I spent all day yesterday just crying and crying.  I just want to go home.  I just want to walk around with out dragging an IV pole everywhere I go.  I want to see my kids.  They've visited once and I was so happy to see them and they were happy to see me, but they each only got to visit with me for 3-5 minutes because there can only be 2 visitors in the room at a time and the people who weren't with Mommy had to be entertained in the waiting room.  I can't help but wonder how that feels to a kid, to not see their Mommy for nearly 2 weeks, then see her for literally less than 5 minutes, and then leave.  I can't think about it much because I know what it did to me.  It hurt like hell to watch them leave.  It hurt like hell to see their eyes darting around the room and taking inventory of "Everything they're doing to Mommy".  It hurt like hell to not just scoop them up and hug them properly because we have to be careful of my lines.  So anyway, yesterday I was a total sad sack loser.  I barely walked any laps, I just sat around crying.  If it weren't for my Dad coming to visit I wouldn't have done any.

Even now, when things continue to look up in very concrete ways and I'll be home sooner rather than later, I'm on the edge of tears.  I try really hard with the Medical Types to be super cheerful and courteous at all times.  Their job is really hard and the last thing they need to deal with is Mrs. Weepy McWeeperson.  Plus I'm paranoid that if they see my runny nose from crying they'll assume it is microbe related and ruin everything by making me stay longer.  No way.

I'm pretty mad at myself for crying.  Things could be so much worse.  I carry a lot of shame about the privileged life I lead, but today, I'm just going to say this is hard.  It really stinks.  I don't feel like doing this anymore.

Anyhoo, despite the whining and crying, 13 days out from the transplant, there is progress being made on multiple fronts and I am grateful for it, truly.  I still wish it never happened and sometimes when you carry something this big, you're just gonna cry.

Day +13 ended up much better than I expected when I started writing this.  There are lots of good things happening today and there is a light at the end of the tunnel.

In case you'd like to know just how easy it is to make me cry with even the weirdest things...

Go to this link and understand that EVERY TIME I watch it I start tearing up by :44 and full on cry the rest of the time

I realize cool kids embed videos.  I just didn't have it in me.  But seriously you guys?  That video makes me ugly cry EVERY time.  That video is 3 years old.  Perdiodically for 3 years I have revisited this video to see if I am free from it's clutches and can be considered  marginally sane again and I CANNOT.  I cry everytime.

So there ya have it, sometimes I cry about cancer.  Sometimes I cry about Lester Holt holding up a cardboard TV cut out and some intern getting to bust out her backyard backhandspring on asphalt for the Today Show.  That's a lotta range.

Day -8, Signing Consents, Mental Refiling

Day -8

Welp.  I'm here.  All hooked up to drug numero uno.  Etoposide for 30 hours.  I'm getting three different chemos over 6 days.  Yuck.  Today is day -8 (minus 8), which means I'll get my actual transplant in 8 days.  The day I get my cells back is Day 0 and every day after that is +1, +2, etc., until I get to day +100, which will be a huge milestone for me.  I've realized when explaining my treatment to people in real life that it's kind of confusing so I'm going to explain this phase more clearly.  First and foremost, it's important to know:

Bone Marrow Transplant Vs. Peripheral Blood Stem Cell Transplant

In a Bone Marrow Transplant they actually put you under and drill out Bone Marrow from your hips or from a donor.  I'm having a Peripheral Blood Stem Cell Transplant where they gave me growth factor shots and harvested stem cells from my blood stream using and Apheresis Machine.   Both of these treatments are called Bone Marrow Transplants interchangeably.  The kind I'm getting is much less risky since they're my own cells and bonus! no drilling.  During my last go round with Lymphoma I read about transplants but I filed it under "Doesn't Apply To Me" in my mind because, seriously, who ever thinks something like that will apply to them?  The whole thought process took about 30 seconds after I read about it: Step 1- decide it doesn't apply to me, Step 2- totally sanitize the reality of what I've just read because it doesn't apply to me, Step 3- file under "doesn't apply to me" which is just next to the circular file in my brain.  

Signing Consents Kills The Romance

So, now I've had to dust off that file and put it back under "Applies To Me" which is cross referenced with "Reality Bites (not the movie)".  Obviously, at no time since they told me this was happening was I happy about it.  But once I got going it seemed a bit romantic in a way...using my own cells...to cure me!  How human and sciency and just nice.  Don't get me wrong, it is nice.  It's just not as romantic as it sounds.  My transplant is really a rescue.  My cells aren't really curing my cancer.  I'm already in remission.  Again.  I need this transplant because the best chance at keeping my cancer from coming back is to blast my Bone Marrow to kingdom come using extremely high doses of extremely powerful chemotherapy.  I get 6 days of it.  The Etoposide I told you about, Cyclophospamide, whose evil twin I've already had, and Carmustine.  This Chemo is going to completely destroy my bone marrow.  All of it.  It is going to completely destroy the source of my red blood cells, white blood cells, and platelets.  It is going to destroy me.  We need to wipe it all out in the hopes that any little bit of my cancer that is hiding will also be wiped out.  Without intervention following these 6 days of chemo, I would die.  I would die of some kind of infection, or I would bleed to death.  I would die.  The stem cells that were collected are being used to rescue me from my treatment.  For a short time, I will be mostly dead.

This is a TAD dramatic.  Only a TAD.

 The reality of this sunk in slowly as I explained the procedures to others, although in my mind it continued to have that sanitized soft focus sheen of "can't possibly apply to me" even though I knew I was describing my own treatment.  What really killed any romance in the idea of being "saved by my cells" was signing the consent forms for my treatment.  In bold on several pages it said "1 in 20" patients will not survive this treatment.  I've signed a Health Care Proxy and Advanced Directives.  I will survive this treatment of course.   1 in 20 doesn't really mean me because that includes 4 year olds and 80 year olds and people who are not in remission before transplant so obviously that won't be me.  That doesn't soften the impact of signing all that paperwork and having to write out in black and white "I am a Roman Catholic, if my death is imminent, please call a priest so that I can receive the sacraments."  It doesn't take the bite out of knowing I'm letting them putting something in me that would kill me without dramatic intervention.  After they put my cells back, I'll get blood products and antibiotics until such time as it appears my bone marrow is chugging along, producing what I need on its own again.  For now I'm hunkering down and doing everything I can to be a good patient.  

Thank you for your prayers, and if you can, please continue them.  Please pray most especially for Michael and the kids.  God's will for them is God's will for me.

In Honor Of My Grandma

Doris Rexford 

On June 1st, this world lost a Great Lady.  Capital G.  Capital L.  My maternal grandmother, Doris Rexford, was just simply a Great Lady.  I cannot possibly do her any justice here, but I want to honor her in some way, so I'm going to tell you a bit about her.  She was a woman whose life, if I were to list all the events, the chronology, the hardships and the accomplishments, sounds like a movie.  I can't do that here, but I need to share a little with you, because she was a Great Lady.

She was born in Exeter, Devonshire, England in 1928.  Her town was targeted by 18 Nazi air raids during WWII and she told us many times about the metal cage they had in their home so that when there was an air raid they could climb inside and be protected in case their home was hit and collapsed on them.  My grandma was known to say "England is my homeland, but America is my country".  She came to the United States at age 17(!) as a war bride, knowing no one but her new husband.  She went from a modern, suburban life in England as essentially a schoolgirl in her parents' home to life as a wife and very soon a young mother in a very rural home with no indoor plumbing.  When she would wash her first daughter's diapers in the winter she would have to hang them on a line indoors and they would freeze.  Solid.  She kept her home immaculate.  IMMACULATE as in it looks like it was hermetically sealed in 1955 when it was built and nobody ever crossed the threshold again.  But people did cross the threshold.  She raised 5 children in that home and welcomed 15 grandchildren and 20(and counting) great grandchildren.  She just never stopped.  She never stopped cooking and cleaning and gardening and learning.  She was a force.

She followed the news very closely and always knew the ins and out of everything that was going on here in the US as well as at home in England.  She kept a close eye on the Weather Channel and was quick with a phone call whenever something serious was going to hit an area of the country where one of her grandchildren had settled.  She watched the financial news and was extremely well informed about what it all meant for her savings, which she recorded meticulously.

One of my favorite stories about my Grandma was a time that I drove her to the bank.  I can't remember now exactly when it was but I think it was about 9 years ago.  Anyway, I drove her to the bank because her CD's were coming due and she had to do some stuff with interest rates and who knows what.  I'll tell you who knew what--she knew what.  Oh my goodness.  She came in there, quite elderly at that point, unable to see particularly well, with all of her calculations written on the back of an envelope.  She had calculated what the new rate on her CD should be based on the financial news and "what Mr. Greenspan said".

Have you ever seen those posters at the bank where they try to sell you CD's and they write interest rates on it with a sharpie to make you think they're on top of things?  It turns out they're not that on top of things, but Grandma sure was.  We were ushered into the cubicle of a poor young man who had no clue who he was dealing with.  My grandmother began to discuss the business she had to complete and he began telling her that the rate on the poster was the rate that they would be using for this upcoming term on her CD's, and that Grandma could expect a return of x amount.  Well, that did not match what was on the envelope or what Mr. Greenspan had to say...so...there was work to be done.

I was getting a bit nervous at this point because honestly I didn't understand a word of what they were discussing and my Grandma's calculations on the envelope were out to the 3rd decimal place and I hate math and I'm the kind of rube who would believe that the numbers on a poster at the bank are accurate.  I had no clue who was right.  I had no clue how this would play out, and I had never really observed my Grandma like this, out in the world.  Grandma walked him through her numbers, which he conceded were correct, but could not be used until somesuch day.  So, Grandma very politely and patiently walked him through it again because she literally knew his business better than he did.  At this point the poor guy didn't know whether he was coming or going.  Grandma sensed this and reached across the desk and put her hand on his arm and said:  "Am I troubling you Derrick?" and I had to stifle a fit of giggles because it all seemed so hilarious.  At some point a manager showed up and after some more back and forth guess what? Grandma and her envelope won.  After a short and very polite speech about what people's unbridled borrowing is doing to the savers in this country Grandma was on her way with her CD's all squared away.

I will never forget that day for so many reasons.  I knew my Grandma was really smart, everyone in her family was and you knew just from talking to her that she was sharp, but to see that kind of knowledge collected and calculated all on her own on the back of an envelope and used to school a bank--it was breathtaking.  Even more breathtaking was the incredible, unshakable grace and politeness with which the entire matter was handled.  Many people in her situation would have given up, and many more would have lost their cool and been loud or obnoxious to try to get their point across.  She was just simply unflappable and polite.  I still chuckle to myself everytime I think of the phrase "Am I troubling you Derrick?".  Poor guy had no idea what he was in for.

I want to tell you so much about her, about how she walked everywhere, even to get her groceries into her seventies and golfed for years.  She'd get up at 5am to play and then walk home and get right to work making sure everything in her home was just so.  When my Mom had her 4th and 5th babies and was working full time she would come over and clean the house and make dinner during the day and when we'd walk in the door we knew immediately that she'd been there because everything was perfect.  If she was still there when we got home we would all fight over who went in the door first because she was starting to lose her hearing and we would always inadvertently scare her which we hated to do.  We started coming in the door and SLAMMING it shut and then SLAMMING our backpacks onto the floor while kicking off our shoes and TALKING VERY LOUDLY because she was not only hard of hearing but was often vacuuming something to kingdom come that you didn't even know could or should be vacuumed.  We still ended up scaring her most of the time, but she was always happy to see us.

That's the thing I really want you to know about her.  She had 5 children, 15 grandchildren, and 20 great grandchildren but she had a way of saying your name and talking to you and about you that made you feel like you were the only one.  She was just so proud of every little thing each of us did and always made sure we knew what all the cousins were up to.  Somehow she always made you feel so incredibly important and special.  A lot of it was all the normal stuff of growing up, but as long as you were trying, that was worth reporting.  She just loved us, and we all felt it.  People always worry about there being enough love in a big family, but my Grandma is proof that there is always enough love.

When my own family started growing beyond what society considers decent, my grandma once grabbed my hand in between both of hers told me "Don't let anyone make you feel badly about these children.  I know it's hard now.  It's so hard, but someday they won't need you anymore and you will be surrounded by such love, Nella.  You will be surrounded by so much love."

She was surrounded by so much love.  My Mom and her siblings cared for my Grandma so beautifully and so generously that she was able to live independently in her own home until the very end.  Doris Rexford was a force to the very last moment, weeding her garden and getting it just so.

Thank you Grandma R, for surrounding US with so much love.  If I am a quarter the woman you were, I'll have lived a life I can be proud of.

The Thing About Remission

My cancer is back.

I'm just going to come right out and say it.  The cancer is back.  It is back and I'm going to have a major butt kicker of a treatment plan that is starting June 2nd.  I'm disappointed.  So so disappointed.  I'm also hopeful.  That is the short version.  If you're into medical details you can keep reading.  If not, you've got the gist.  I have cancer.  Again.  But OH! OH!! I'm not pregnant this time so there's that.  Since I'm not pregnant I get all kinds of red carpet luxuries like general anesthesia for surgery.

Remission is a history report, not a promise.

The thing many people don't understand about remission is that it doesn't mean you are cured.  You have to have 5 years of remission to be considered cured.   I understood that totally, and even felt a little funny when I would post about remission on the blog or on Facebook.  I knew that remission wasn't a promise, but I also knew many people don't really get that.  I felt like I was leading my friends and family down the primrose path, but I also knew any time cancer free was worth celebrating.  I don't regret any of those posts because those milestones came with real joy and real accomplishments and those were real months where I could be present with my family and serve them and set goals for myself and work towards achieving them.  So, while in some ways posting about remission felt like whipping up false hope, it wasn't false hope.  That was real health and real time spent living this beautiful life I've been blessed with.

Unfortunately, that doesn't change that remission isn't a promise of days ahead.  It's really just a history report of healthy days lived.  When they scan me during remission checks the truth is that they can't guarantee the next three months, they can really only say: "The last 3 months seemed fine, and hopefully the next 3 should be ok too."

So how did this happen?  Cancer is a tough enemy.  It can hide just one cell in your body, waiting to start growing again.  It can be totally eliminated and your DNA can start switching switches and BAM, it's back.  There was nothing in my past diagnosis, staging, or treatment that would have indicated that I would be in the 10-15% of Hodgkin's patients that relapse.  Even pregnant, I was as low risk as low risk could be.  That's why understanding statistics is important.  Numbers are numbers even when they're people.  Even when they're people you love.  Even when they're you.  Someone has to be in that 10-15%.  That someone, this time, is me.

How did you know the cancer was back?

Well, in a weird way cancer helped me catch itself this time.  I learned through my last treatment the importance of being confident in my experiences and intuitions and being assertive about voicing them when I felt something was off.  My natural impulse is to doubt myself and assume that I'm being oversensitive and overdramatic and not tough enough.  I learned during my last treatment to tune into what my body is telling me and to think it through and be ready to communicate to the best of my ability.  I learned to believe in myself and to advocate for myself. 

One day I felt a flare of itching on my ankles and my heart dropped into my stomach.  Please, God, no.  But the thing about itching as a symptom is that plenty of people itch for a gajillion reasons that are not cancer.  It's just something humans do.  But, it was that itch.  It's just different.  It's not on top of my skin, it's down way underneath and has a raw burning quality even though the skin on top looks totally fine.  Instead of telling myself I was crazy I made a mental note, said a prayer, and decided that if it happened again I would take it seriously.  It was such a short little flare, about 2 minutes, and then it was fine.  I also knew I had a CT scan coming up and I figured if it happened again I would tell my doctor at my follow up.  I had 1 or 2 small flares and decided that yes, I would tell the doctor.

At my appointment following the CT scan I was told they saw a small area that was a bit enlarged but within the normal range.  I had a really bad respiratory infection during the scan so that could easily have been the explanation.  That's what lymph nodes do when you get sick.  They get mad and help fight the infection.  I almost didn't say anything about the itching.  The doctor was turned away and noting the respiratory infection in my chart and I managed to stammer out "I....um...I've had a few weird...I know it's probably just paranoia but...you see I just had a few very small flares of itchingandIknowI'mjustbeingparanoid.  Hehe.".   Well, her head just snapped right around and she looked right at me so seriously.  So I started in again: "I mean I know people itch all the time but it just makes me a bit nervous because it's the same quality as before and I just thought I should tell you and I know I'll get scanned again in a few months and I'm sure it was nothing but I thought you should know.".  Then she started writing in my chart.  Crap.  "You were right to tell me.  We'll keep an eye on it and it's likely fine, but if it happens again you need to call.".

Doctors love to say: "It's a straightforward procedure." 

About a month later, I had to call.  I had a few other little flares of itching.  When I say flares that actually makes it sound worse that it was.  They were just whispers of that old itching, but it was still had the same character and quality as the really bad itching before my last diagnosis.  I called the doctor and Michael and I joked that now we would get empirical proof of how crazy I am.  I was scheduled for a PET scan the next week and we were really nervous but tried to pretend like it wasn't happening and joked a lot about how crazy I am.  We went to the follow up after the PET scan and we were nervous but hopeful.  The nurse practitioner came in and sat down and said:  "The PET scan lit up so we're going to need to do a biopsy.  It's a very straightforward procedure."   CUE TO ME LOLOLOLing and interrupting:  "No offense but according to you guys it's almost always a straightforward procedure but YOU'RE NOT THE ONE GETTING CUT OPEN TO FIND OUT IF YOU HAVE CANCER!!!!".  Then she was like: "......yeah...."  I laughed a bit more and then finally let her explain the procedure to me and then my oncologist came in.  And she gave me a long hug.  A long one.  I knew why, because I already knew at that point what the biopsy would show.  I just knew.

She told us that in Hodgkin's patients that have PET scans light up this soon after remission the chance that the cancer has returned is 50%.  She told us it was also possible that it could just be some other infection or my Thymus coming back online after Chemo and being a bit overactive.  It was nice to have those options to cling to, but I already knew.  I also knew I'd have to pretend for everyone that I didn't already know I had cancer again.  I asked what we would do if it was cancer.  The three words that I heard next hit me so hard, like a hit to the face, stomach, and groin all at once.

Bone Marrow Transplant.

Tears.  Gasping for air that seemed inexplicably to evaporate from the room.  Bone Marrow Transplant.  I don't know how I got up the courage to ask the next question:  "If I have to do that, what are my chances?".  Pause.  (Doctor collects herself as if to recall lines from a script): "In Hodgkin's patients the prognosis is 50%."  

Jesus deliver me.  I lost it.

I could hear my dear sweet doctor telling me we had to positive and that we could do this and that we needed to wait for the biopsy.  

But oh Jesus, please PLEASE take this from me. 

I calmed down enough for her to give me an overview of what the treatment plan would entail but I was too upset and too "just thrown into a washing machine on the spin cycle" to understand anything other than "inpatient treatment" ie. a lot of time away from home, and "blood transfusions" ie.  gross.  And then suddenly we were in a numb fast forward in slow motion where we met with a surgeon, scheduled a surgery where bonus(!) I would be under general anesthesia because I'm not pregnant this time.  And then another numb fast forward in slow motion to the day of the surgery where I got put under and then woke up and vaguely remembering Michael telling me they thought is was Hodgkin's as I fell asleep again.  When I finally woke up from the surgery I asked Michael if I dreamt that and he had to tell me that I didn't dream it.  The pathologist who was present at my surgery thought that it was Hodgkin's but there were more tests they had to run.  I already knew.

As I type this I'm recovering from surgery and I have now received confirmation that my cancer is definitely back, and June 2nd I will begin treatment.  If you're still reading you are a really patient nice person because I haven't even told you what they're going to do to me yet.  You can drop out at anytime.  Seriously.

What's the plan?

I'm having an Autologous Bone Marrow Transplant.  That means they will actually use my own stem cells for my transplant so there are no concerns about matching a donor or about Graft Versus Host Disease.  I'm still semi fuzzy on all the details because we haven't met with my transplant team yet.  What I know for sure is that this Friday, May 30th, I'm going in to have a Medi-Port put in.  I didn't have one last time because YUCK but this time, for the amount of pokes and the ornery nature of my veins it's a no brainer but it's still yuck.  The medi-port is a thing they surgically implant under the skin in my chest to make it easier to give me stuff intravenously as well as to draw blood.  The following Monday, June 2nd, I'll be admitted into the hospital for 3 days, during which time I will receive continuous chemotherapy that is much more powerful than the chemo I got last time.  This time I'm receiving chemo called ICE.  I will be really sick most likely WAY sicker than last time, I will lose my hair again, I will need to be monitored constantly even after I come home after the initial three days in the hospital.  I will likely need transfusions of blood and platelets.  I will be at a much greater risk of infection than I was the first time when I "just" got ABVD chemo.  3 weeks later, if my blood has rebounded adequately and I don't have an infection, I'll go back in for 3 days of chemo.  

Hopefully, after doing the ICE chemo twice, there will be room in the Bone Marrow Transplant Unit for me.  If there isn't I'll have to do another cycle of chemo.  If there is a bed for me, I'll be given shots over a course of a few days that will force stem cells out of my bone marrow and into my bloodstream.  The stem cells will be harvested and frozen in preparation for the transplant.  Then I'll get a course of even more powerful chemo and I may or may not get radiation as well.  When my entire immune system is good and dead, my stem cells will be given back to me intravenously.  That part is the actual transplant.  Gross right?

Then we wait.  I will be supported with blood products and antibiotics until, God willing, my bone marrow begins to repopulate and produce healthy blood on its own.  During this part of the process I will be hospitalized in a specialized unit for 3-6 weeks.  Three.  To.  Six.  Away from my husband and babies.  

That's an overview, we're still a bit fuzzy on some of the details and chronology because frankly, we are still in shock.   We are disappointed and we don't want to do this.  But we're going to do it.

To summarize:

Bad Things

• My cancer is back
• I'm having a Bone Marrow Transplant
• I'm going to hospitalized a whole lot
• I'm going to be really sick

Good Things

• We caught it really early
• There is a very small amount of cancer
• My prognosis is better than that initially quoted 50% because:
•  I'm young (they transplant patients up to age 75)
•  I'm healthy (so much that each time I see a new nurse or doctor their jaw drops, I'm working on swimming a mile people!)
•  I'll be going into transplant in remission which isn't always the case
• We have the most incredible support system

Please pray for my husband and children, this is going to be so hard on them.  

This is going to really be yucky and really difficult, but I'm going to let Emma Stone tell you why it will be ok:

All I do is WIN.  Drop the mic.

On Ash Wednesday, Would You Pray For Them?

I don't have much to say today, except to ask you prayers for some of God's children.

The entire Western New York community has heavy hearts this week, as we learned that Ben, a little boy I've mentioned here previously, has weeks to live.  Despite surgery and initial treatment his brain tumor has grown so inexplicably that he has been sent home to spend his last days in peace surrounded by his family.  The grace and strength that Ben's mother has shown through this ordeal are nothing short of a call to action for the Body of Christ.  We may want to cry and wallow in the unfairness, but if Mindy can find the strength to rise to this challenge, we must find the strength to pray her through it.  Please pray for this family.  If you feel called to do so, please donate to help them or for information about attending Ben's benefit.

I mentioned another child facing brain cancer here once before.  My friend Jeff's little girl was diagnosed with brain cancer around the same time as Ben.  Please pray for Ava and her Dads as they begin the arduous treatment process.

Finally, a friend of mine from college contacted me recently to let me know that she has been diagnosed with breast cancer.  Her cancer is in stage one and is very treatable.  Regardless of the great prognosis the treatment will be difficult and she has 4 small kids.  Please pray for Sweetie.

You may read this list and feel hopeless and helpless, and you are.  But God is not.  Please join me in praying that His will be done and His children be comforted.  Ben and his family, Ava and her family, and dear Sweetie and her family will benefit from them.

When You Assume...

That's me up there after those last two posts.

Get it?  I made an ass, not really out of you, but definitely out of me.  I ended up dangling from a metaphorical cart because I broke a cardinal rule of writing and I assumed you knew what was in my head without me communicating it as clearly as possible.

When I wrote the What NOT To Say To Someone Facing a Health Crisis I made some fatal mistakes.  I mentioned that each person's response to facing a health crisis will be different and that is so important to remember and I just did not emphasize that enough.  In fact, each individual response will be SO different that I followed up with a post about what you SHOULD do that effectively contradicted the first one.  I heard from dear dear friends who read the NOT post and felt like they had messed up somehow and that could not be far enough from the truth.  So I'm going to try to filter the mud I mixed up over the last 2 day and communicate things a bit more effectively.  

Clarification #1

I wrote those posts with a certain group of people in mind.  I guess I was envisioning that advice going to the friend/acquaintance on the periphery who was moved to act but was not necessarily close enough to the patient or family to be able to easily identify their needs.  What I realize now is that a) I didn't make that clear and 2) I didn't account for the extrovert-y types who don't really have this "acquaintance" category.  

Clarification #2

I originally wrote those posts remembering certain incidents where I encountered someone who, while still meaning well, lacked appropriate boundaries or was just so codependent that they didn't realize that they were making my illness about them.  These are a small minority of the interactions I had during my illness but they were the most draining and traumatic.  I generalized those to inform all of my advice and didn't emphasize that the majority of people who would want a list of do's and don'ts aren't the kind of people who would ever make it about them anyway.  I didn't think that through completely which created a situation where when I listed "I can't imagine" and "How are you?" as things you shouldn't say I alienated a lot of well meaning people because I wasn't clear enough about what I was trying to say.  

So What Were You Trying To Say?

I'd like to clarify my stance on "How are you?" and "I can't imagine".  These are likely ok for most people but understand, if you ask how someone is and they say "Fine", don't push.  Unless you are very very close to that person please respect whatever boundaries they are setting at that time.  Don't say "I can't imagine" and then fish and fish for "it's not that bad", or if you get "it's not as bad as it seems" or some such don't push and push for all the gory details.  You wouldn't put a veteran on the spot about what they've seen and gone through if you are not extremely close to them.  I'm not comparing cancer to war, but when you have cancer or watch a loved one go through it you don't go to the hospital so they can feed you Skittles while they braid your hair.  It is traumatic, it is grueling, and it's hard to discuss every single time you have a conversation.  So express concern, ask after their wellbeing, but don't push a cancer patient or their caregiver or someone else going through a crisis to make you into their confidant or savior.  I hope this helps clarify things a bit.

Ninety eight percent of the people we've encountered on the road to recovery have been nothing but generous and loving and wonderful.  One other thing I'd like you all to remember is that when someone is diagnosed with cancer, or loses a child, or faces some other awful crisis, they do not become a character in a movie.  They stay the same unique, flawed child of God they were before, so the same hang-ups, impulses, and baggage they had before the crisis will inform the way they receive your efforts.  The human spirit combined with the grace of God can meet immense challenges in ways that are incredible, this is true.  What is also true is that extreme hardship brings out all of our personal protective measures, so using me as an example, everything in me was screaming to get in the bunker and hide all the while I had to be out at appointments and accepting people into my home more than I ever had in my adult life.  This colored my interactions with everyone all the time so that there were times that well meaning conversations were just too much at that particular moment.  So if you do reach out to someone and it doesn't go how you thought it would, please have mercy, they are bringing so much stress to every interaction and that is going to cause some awkwardness from time to time.

Finally, I want you to know that I remember what it's like to be on the other side.  To hear about a situation that is (here I go contradicting myself) unimaginable and to short circuit at the enormity of it and your powerlessness to do what you most want--which is to stop it.  I know what it's like to want that person to know how deeply you feel for them and what it's like to realize nothing you say seems like it can do much good.  When you approach someone with love and prayer and your very best intentions, you will bless them.

 You will not take it away.  You cannot take it away.  

You WILL still bless them and lift them up.  

Back to you dear readers...help me sort this out...is that any clearer?

Channeling My Inner Goat: What Cancer Taught Me About Negative Self Talk

One night last May, after I'd started chemo but before chemo was really kicking my butt, it was really warm.  I don't like warm.  Well to be honest it was probably like 68 degrees and I was likely having a pregnancy induced hot flash but like I said, I don't like warm.  Michael came in our room to find me flopping around on the bed like a fish out of water trying to get comfortable and we had the following exchange:

Michael:  Do you want me to grab you a blanket?

Me:  Ugh..NO...I'm DYING...

Michael:  .................................could you..........................not...........................say that?

End Scene.

That little exchange really stopped me in my proverbial tracks.  I felt horrible.  How could I use that phrase: "I'm dying" so flippantly when it was possible that I could shuffle off this mortal coil sooner than anticipated?  I could do it partly because we say "I'm gonna die" and phrases like it all the time in casual speech, which of course is how I defended this behavior to myself.  That night, in the following days, and all the way up to this moment, I've wrestled with this.  The truth is that yes, it is just a casual turn of phrase, but it is also a bad habit.  I'm prone to hyperbole and in difficult frustrating situations this is often the soundtrack in my head:

I can't take this another minute, I'm gonna die.

I will not survive this.

KILL ME NOW!! (delivered while shaking my fist at the heavens)

Am I suicidal?  Of course not.  I'm just having a melodramatic pity party, and unfortunately I'm so prone to these types of histrionics that I can easily work myself into a snowball of doom over things that are tiny and fleeting in the scheme of life.  There are so many negative aspects to this self talk, not the least of which is that if considerable time, effort, and money has been expended on a daily basis precisely so that you will not die it is kinda crappy to shake your fist at the heavens and beg for a lightning bolt because a little person wrote on the couch or whatever.

I don't mean it like that I argued with myself.  Then why say it? I annoyingly countered...to myself.  Even worse, none of the situations that prompt this sort of melodrama are actually that big of a deal.  I never go down that mental road when faced with actual trials.  When it took 4 tries to get my line in for chemo?  No worries!  Breath through it!  Offer it up!  I'm in labor with no drugs?  Enter into it.  Accept it.  Breath through it.  Offer it up.  Even that dark dark night when I found out I was a pregnant cancer patient, I never once said I would die.  I wondered how on earth I would do it, but I never once expressed a desire or a fear that I would die.

But if I have to have this conversation with my 4 year old 6 times before I get down one cup of coffee in the morning?

4 year old:  Mama?  Is tomorrow is the next day?

Me:  Yes.  Tomorrow is the next day.  It is the day after today.

4 year old:  What day will it be when I wake up tomorrow?  It will be tomorrow?

Me:  When you wake up tomorrow it will be Wednesday.

4 year old:  And it will be tomorrow?

Me:  Well, then it will be today, because it will be the day you are on.  Tomorrow means the day that comes next.

4 year old:  So Tomorrow is the next day?

Me:  Yes.  Tomorrow is the next day.  It is the day after today.

At this point in the 5th or 6th iteration of this super fun exchange I'm mentally shaking my fist and bellowing "KILL ME NOW!".  But really?  Kill me?  Now?  Awesome attitude for a cancer survivor with 6 kids.  But...BUT what I really mean is I don't want to do this now.  I can barely tolerate this now.  Spending all day dealing with little kids can occasionally make me feel like I am on. the. brink.  I don't want to die, but I start to feel like a caged animal that's getting poked with a stick.  I just want out.  I definitely don't feel like having that conversation again, or cleaning up that mess again, or keeping my composure through someone's temper tantrum again.

I was talking through this with my sister one day and I was trying to express this conundrum.  Sometimes, I told her, I get so overwhelmed and frustrated that "I want to die" just doesn't sound wrong.  Sometimes I just don't want to deal one more second.  But I obviously really don't want to die all the way...I just want a break.  Some kind of suspended reality like a coma or something, but it can't be a coma coma because it would cause hardship for my family.  It just needs to be temporary and short, like narcolepsy...and that's when it hit me.  I want to be like this:

I want to be a fainting goat.

It's the perfect plan.  The next time I hear squeals coming from the room containing 3 little girls who should have been sleeping an hour ago and I go upstairs only to be greeted by requests for more drinks, more snuggles, or pointing fingers of blame at their cell mates I just want to pull one of these:

Oh, your sister was breathing loud?  See ya.

I want to have a reset button.  When I'm on the brink of losing it and the crazy just keeps coming at me I want to be able to just hit the deck like one of those goats.  Tell me that wouldn't stop little people in their tracks.

Kid:  I want a yogurt.

Mom:  No.  Dinner will be ready in 10 minutes.

Kid:  I'm so hungry!  PLEASE!  I just wanna yogurt!

Mom:  I know you're hungry and we will eat in ten minutes.  I am done discussing yogurt.

Kid:  Mom, mom, mom, mom, mom, mom, mom, mom, mom

Mom:  

Nope.

Once I formulated this theory, that I wish I could just faint momentarily when things got overwhelming, I didn't really need to faint anymore.  Where I would normally launch a pity spiral of doom I would immediately get the mental image of a fainting goat and it would make me laugh and in a way it gave me the mental break I was looking for.  Sometimes I even pantomime being a fainting goat by dropping my head to one side, sticking my tongue out the side of my mouth, and closing my eyes.  I just let myself go kinda limp.  It makes me giggle everytime.

This is a gift cancer gave me.  It showed me a bad habit I'd developed, that terribly negative and melodramatic and frankly bratty self talk, and presented me with an opportunity to replace it with something much more positive.  Had I not faced the actual threat of death, I would have gone on indulging in these ungrateful, vapid mental rants and I would have continued to tell myself the lie that I shouldn't have to deal with the poop in the tub, the siblings bickering and needing instruction, the person driving too slow when I'm running late...I DO have to deal with that.  I have to deal with all of that, with love, with compassion, with patience, and with a positive empowered outlook.  It is my privilege to deal with that, because that is the stuff of life.  Sometimes I might not feel like being patient when someone pitches a fit right before they put their shoes on for school because the seams of their tights aren't quiet right, but I have to remember that it could pretty easily be someone else having to deal with it in my place because I'm not there.  Instead of going off the deep end and even joking about death, I'll just close my eyes and channel my inner goat.

So, the next time your kids are making you nuts, or you're stuck next to a lady at a dinner party who is droning on and on about her bunions, or someone is asking you if you're done having kids, or when you're going to have kids, or whatever it is that makes you feel like you're on the cusp of losing your goodness gracious mind, instead of succumbing to some kind of negative mental spiral, think of these guys:

You're welcome.

4 Months And A Day

Yesterday was 4 months since my last chemo.  In some ways I can't believe it's been that long and in other ways it already seems like a lifetime ago, like elementary school or something.  It is both far in the rearview and and ever present.  It feels like it's way in the past because I'm exercising again, Pilates once a week for now plus swimming laps several times a week.  I'm really and truly The Mom again, driving all over kingdom come and feeding and clothing and schooling and just Momming all day.  I arrive at the end of the day tired and overwhelmed and pretty sure there is no way I can do it again the next day, but it's not because I'm sick, it's because that is the life of a Mom of small children.  Many days go by where I wouldn't think of cancer at all if it weren't for my short hair and little reminders.  I still have bruises on my arms where the IV's were for my last 2 treatments.  Seeing them reminds me of the serious stuff they were putting in me not to long ago.  Most days I still can't wear my wedding rings because I still puff up from poor circulation.  This is improving as I exercise more.

My hair has really come in and I rarely cover my head anymore.  This is a new development in the last few weeks, as my comfort level with my new coiffe grew and the kids' did as well.  The first place I ever went with a bare head was to Pilates at our YMCA and it was no big deal because almost everyone else in the class had short hair.   I have my italian genes to thank for the lightening fast regrowth I'm experiencing.  Right now I look like Fantine, but a really romanesque Fantine so I guess that makes me Patti Lupone?  Seriously, could it get any better?  I would argue that no, it could not.  But, I couldn't find a picture of Ms. Lupone as Fantine post hair selling when I made this:

Anne Hathaway as Fantine vs. Do you know how hard it is to take a profile selfie and also my neck isn't that short but I had a cowl neck sweater on.

So that's my hair update.  I'm really feeling better all the time.  Avery continues to do beautifully and is now in the 22nd percentile for length and the 40th for weight so not only is she on the chart...she is ON the chart.  She's our little sweet fatty baby.  As for our 4 month milestone, she's not that impressed:

What's the big deal Mom?  Aren't we just always going to be kicking ass on a daily basis?

Finally, please pray for 2 precious children facing difficult diagnoses:

First for Ava who was diagnosed with brain cancer a few weeks ago.  Her Dad Jeff is a friend from my days as a cheerleading instructor with the National Cheerleaders Association.  Jeff and his partner brought Ava to the ER and were told she had a brain tumor the size of tangerine.  The tumor has been removed and now they face treatment.  Please pray for Ava, her dads, her sister, and everyone who treats her.

Please also pray for a little boy named Benjamin.  I don't know Benjamin or his family personally, but we have many friends in common.  Benjamin is another child whose parents found out their child was facing brain cancer.  Benjamin's cancer is very aggressive and he, his parents, his siblings, and his treatment team need our prayers.  Please pray for them.  That link is for an event that already passed, but please continue to pray.  

Hope all is well with you dear readers!

Happy New Year!

This past Saturday marked exactly a year since the chiropractor felt a lump in my neck.  It's surreal to look back now and realize a whole year has passed.  This year will be full of "a year ago today"'s.  The 16th of this month will be 3 months since I've had chemo, and also one year since I was crying in the stall of a Wegman's bathroom.  I know a lot of people would expect me to be all "See ya 2013, don't let the door hit ya blah blah", but I'm really not.

Instead of seeing 2013 as the year I had to ask for help, I want to see it as the year I learned just how much help there was from so many unexpected places.

Instead of seeing 2013 as the year I had cancer, I want to see it as the year I beat cancer.

Instead of seeing 2013 as the year I faced a crisis pregnancy, I want to see it as the year we welcomed Avery Hope into our family.  Seriously...she's gone from this:

1 Day Old: 4lbs 4oz

To this:

She turned 5 months old on Christmas Eve.
She's closing in on 15lbs and eating and breathing LIKE A BOSS.

I want to look at it as positively as I can.  Is that easy? NO.  In many ways looking forward to 2014 is even scarier than looking back.  Do I have plans for 2014?  I guess.  Since I last wrote I've felt like I was in one of these:

I've been swimming and swimming and feeling like I was getting absolutely nowhere.  That makes it hard to make plans, or more accurately, to live up to the plans I made when all I could do was lay around and tappity tappity on the keyboard.

Sorry I dropped off the face of the planet.  It was that, or drown.  You don't really need me to tell you that the last 3 months contained Halloween, Thanksgiving, and Christmas.  You have a calendar.  It's just that, I was also learning to be The Mom again.  I've been learning to be the Mom again in a totally new family than the one I had when I started chemo.  Everyone is older and we have new schedules and new needs and we also have a new baby.  I almost forgot about that part.  I was crying to Michael about what a loser I was because I don't have it all together now that chemo is over and he was like: "Do you ever have it together before a baby turns 6 months old?".  Good point.

Anyway, I'd like to continue to write here, I just don't know when or how to make that a regular thing, at least in the short term.  I just said to my friend Sarah that in 2013 I was just a passenger.  In 2014 I'm learning to drive again and I wanted to be a better driver than I was before.  I have to figure out this new Nella I'm walking around in and how she ticks.  I have to figure out how to live up to the gift of remission.  People have contacted me to ask if I'd be continuing this blog.  Some asked me to please continue this blog...seriously...I'm not even kidding.  I'm going to try, I'm just not sure how much I'll be able to write at least in the short term.  Most attempts of mine to write lately result in my brain being like this:

I'll keep trying anyway.
 I'm not sure if that means I'm persistent or have the intelligence of a Hamster.

Remission is weird.  Everyone thinks cancer is done but it's really not.  Not for me anyway.  Don't get me wrong, remission is a blessing and there are many who never get to this point and I am so grateful.  At the same time, remission doesn't mean I'm out of the woods.  I'm not considered cured until I've made it 5 years with no detectable signs of cancer.  I just had a follow up CT scan and I go for a check-up and to get the results Friday.  I have to live my life like cancer couldn't just pop back up anytime, and that's what I intend to to,  but it's hard when I'm still going for scans and check ups every few months.  I'm still living with the physical effects of chemo.  I wake up with nerve pain in my arms at least once a night and my circulation is not great.  I can't wear my wedding band because my hands are a bit swollen.  My cognitive function is still in the crapper.  My energy level is improving and the cognitive function is as well, just not as fast as I'd like.

In many ways it's like this cancer thing is just starting to happen to me because as the physical effects slowly disappear, everything that happened is starting to really sink in.  When I was in the middle of it I was just pushing pushing pushing through being positive positive positive and chirp chirp chirping that I was blessed blessed blessed when I wasn't asleep asleep asleep or loopy loopy loopy.  Now I'm trying to be Mom again and sometimes it just hits me all at once and I'm just like "DID THAT REALLY ALL JUST HAPPEN?!?!?!?  WHY ARE WE ALL JUST STANDING HERE ACTING LIKE LIFE IS NORMAL DO YOU KNOW WHAT KIND OF CRAZY ASS CRAP CAN HAPPEN TO YOU AT ANYTIME??????  OH MY FLIPPING GOODNESS THE LAST YEAR SERIOUSLY JUST WENT DOWN LIKE THAT?!?!?!?!?!?".  And then I feel bad.  Because I'm in remission and I should feel happy and grateful.  I should feel light and free but instead I feel a huge weight of responsibility.  I need to live up to the gift of my remission.  That's what 2014 is about.  That's what every year from now on will be about.  That's what every year should have been about all along and should always be...living in a way that reflects gratitude for the gift that is my life.

Obviously 3 months out from the last time they poisoned me isn't the best time to expect myself to be writing a whole lot, exercising non-stop, or most of the other things I dreamed I'd do after remission back when all I could do was lay in bed all day.  I'll figure it out, bit by bit, and I'll try to share it with you when I can.

Happy New Year dear friends!

Where The Rubber Meets The Road

I wrote this to clean out the clutter in my brain and to ask for prayers.  It's hard to declutter my brain right now because Chemo is making it very cloudy and messy and it's hard work to think or put together words at all.  If you don't want to read through my mental dust pile you can skip it but I'd appreciate if you'd just say a prayer for me.  

I'm having a PET scan today.  As I write this I've already gotten through my first needle of the day because I had my mid-cycle blood work done about an hour ago.  Thankfully my blood came out willingly this time so that's positive.  I was anticipating a lot of digging around and playing musical phlebotomists so I'm really relieved to have it behind me.

I'm getting tired guys.  I'm physically tired because of the Chemo, but I am getting so mentally and emotionally exhausted.  God willing (biology cooperating?), I have only 2 treatments left.  In the beginning I had anxiety over the unknown.  I thought that with time and experience I would become desensitized and that the desensitization would mean that by the end of my cancer treatment I'd be an "old pro".  Being an "old pro" in my mind meant I would reach a point where getting poked with needles and other medical procedures that were previously challenging would become no different than shaking someones hand.

Instead, I'm experiencing some kind of increasing hypersensitivity.  It makes sense--my body is registering that it is being poisoned and is rebelling, big time.  I'm in an almost constant state of fight or flight and anything hospital related, even just figuring out who will pick up the girls from school elicits powerful nausea, physical shakes, and tears welling up in my eyes.  Sometimes I'm not doing anything cancer related but suddenly I'm tasting saline like I do when they flush my IV at chemo even though that's impossible, because I don't have an IV and I'm safe at home.  Sometimes the aching in my arms makes it so that all I can think about is being poked with needles, but they are not willful thoughts.  When these things happen I feel like such a loser.  I feel so out of control.  I feel like I should be able to make it stop or that if I was being truly positive and truly brave none of those things would happen at all.

And yet, I am being poisoned.  It is good poison.  It is saving my life.  Unfortunately, none of that changes that my body only knows it's being poisoned, and it wants out.  My body is begging me to run away and save it from the poison and it's pulling out all the stops to try to force my hand: anxiety, nausea, flashbacks, exhaustion, anger, dizziness, you name it. No matter what it tries, I have to tell it no and walk back into the fray over and over.  My body and I, we are at war with each other right now and it's hard because it's a fight I can't escape.  Not only can I not escape it, each skirmish leaves me feeling less capable of fighting the next.  I feel less capable, but I am NOT less capable.  In the fight between body and spirit, I will only allow my spirit to win, but gosh it's hard.

In the beginning my cancer was essentially an intellectual exercise.  The idea that I have about an 80% chance of surviving 5 years after my diagnosis sounded like a guarantee.  It was so easy to be positive when cancer was an idea and the discomforts were minimal and fleeting.  Now cancer is very real and relentless and believing I'll beat it takes a great deal more convincing.  80% isn't as comforting anymore.  I do still believe I will be ok, but it is hard work to believe.  I'm believing it because it's the right thing to do.  This is seriously where the rubber meets the road when it comes to meditating on my blessings and turning to my faith.  It's easy to think that those things aren't working anymore when the fight starts to really challenge me so aggressively.  It's easy to think I was being naive and that those things never actually worked at all when I'm experiencing fear or despair or pain or I can't be totally in control of my thoughts and feelings.  I wasn't being naive.  Meditating on my blessings and turning to my faith are working and they always worked because I keep doing what I have to do, no matter how I feel.

I'm having a PET scan today and a CAT scan on Friday.  The results will determine if I really do only have 2 treatments left or if I'll need more.  Please, God, please don't let me have more.  I don't know how I can possibly take any more.  I don't know how I can possibly keep forcing myself to believe if they say I still need treatment.  I don't know how, but if I have to, I will.  I will do whatever it takes to kill my cancer.  I will keep believing we're killing the cancer no matter what those PET and CAT scans say.

Can you do me a favor?  Could you pray for me?  It really helps, and I really need it.

So It Turns Out I Have Cancer

First, if you're here because Kendra from Catholic All Year sent you or because Sarah from Amongst Lovely Things said she was praying for me, welcome and thank you for stopping by!

I really really don't want to write this post.  Don't freak, it's not bad news I haven't already dropped on you.  It's just that, well, I have cancer...and it makes me feel sick.  Apparently, despite the repeated verification by doctors and general knowledge anyone with cable has about cancer, I need to be reminded that cancer makes you sick.  It is still news to me.  I need to be reminded that cancer makes you sick, I need to accept that cancer makes you sick, and I need to ADMIT that cancer makes ME sick.  I don't want to write this post because I don't want to admit that I'm not able to sail through cancer treatment while I'm just a few weeks postpartum like nothing is happening.  I don't want to admit this is hard, but the last few weeks have been so hard.

On a particularly bad night right before Avery came home I was blessed to read this post by Anne over at Modern Mrs. Darcy about the fact that life is hard and we should just admit it.  It's a real gem and it has a great sports metaphor so go read it.  She said:

"There’s no shame in the struggle: the struggle is what makes it great. The struggle is what makes it glorious."

 So...in that spirit...it turns out I have cancer, like, really have it.

Hi, My name is Nella and I have cancer.

HI NELLA.

I realize that of all people I should not be the last one to come to this realization, that I have cancer, that is.  After all, I've been typing it and saying it and living it officially for almost 5 months now, more if you count all of the 3 and a half months it took to diagnose me.  But honestly?  For most of it I felt kind of like a fraud.  I felt bad even saying the word cancer in reference to myself.  Chemo was hard but manageable when I was pregnant, but my oh my, it is a brand new beast postpartum.  These last two treatments since Avery was born have really kicked my butt.  Without a doubt these last few weeks have been the hardest of my life so far.  The chemo is hitting me so much harder than before.  I'm sicker, tireder, and just generally getting my butt handed to me.  That is the God's honest truth.  I guess it makes sense since it's pretty much general knowledge that having Chemo hands your butt to you and actually, having a newborn hands your butt to you, so it should follow that going through Chemo and having a newborn would throw your butt at you.  If we were talking about someone else that would be as plain as the nose on my face but since I'm talking about me I've been a real numbskull.

A big reason that things are worse now is that I have to get Neulasta, which is a synthetically modified protein that stimulates my bone marrow to make more white blood cells.  I've been to Chemo twice since Avery was born and the 2nd time around my blood work showed that my white cells were very low.  Very scary low.  Low enough that I now have to get a shot of Neulasta after every Chemo.  Which means another trip to the hospital after every Chemo and another poke with a needle and I've had a DIPE FULL of getting poked with needles.  The thing about Neulasta though, is that the inconvenience of the extra trip to the hospital and the discomfort of the extra poke from a needle is NOTHING compared to the total jerk that Neulasta is.  If I were to anthropomorphize Neulasta I would say Neulasta is that person who is so very smart and capable but is inordinately aware of how very smart and capable they are and feels the need to lord it over everyone they encounter.  Neulasta is that person at a party who could be a great conversationalist because they are very insightful and knowledgeable, but are instead miserable to talk to because they are such arrogant windbags.  Neulasta would be that person because Neulasta does a great job of recovering your white cell counts, but won't shut up about it by giving you horrible bone pain and occasional difficulty breathing.  Neulasta works.  SO WELL.  But--Neulasta hurts.  SO BAD.  Here is where I briefly address the medical community on the behalf of the rest of us:

Dear Medical Community,

I am a patient who has been diagnosed with a life threatening illness.  I am currently undergoing treatment for said illness.  I am confused about something and I hope you can help.  You have completed a great deal of very intensive, very expensive training which means I am supposed to grovel at your feet and hang on to every crumb of wisdom that tumbles from your experienced lips.  If you do not want me to google my situation why do you withhold simple information that could save me from suffering needlessly?  If you want to be entitled to rolling your eyes at the mention of WebMD, why do you only seem to acknowledge the existence of certain side effects only after they are happening?  Do you fear the power of suggestion?  That doesn't seem very scientific and from where I'm sitting it seems a bit cruel.  Please advise.  I await your wisdom.

Sincerely,
The Patient*

*Brief aside to actual Medical Professionals who might happen upon this blog:  I realize this is snarky and unfair.  It's just that sometimes you drop the ball and it's a day at the office for you but it's a HUGE DEAL to us.  You're forgiven, but please take this under advisement.  Thank you.

Anyhoo, what prompts this correspondence?  Well, one morning after days of horrible pain throughout my entire body and breathlessness that was bad enough to make me call the doctor, I googled Neulasta along with the symptoms I was experiencing.  I found out that what I was experiencing was extremely common despite the fact that I had been told to expect "flu like" symptoms.  I also found out that for many patients, Claritin can make a huge difference.  Yes, over the counter Claritin that helps millions of allergy sufferers everyday and is readily available could take away crippling pain and my scary struggle to breathe efficiently.  I had Michael take a look at the structures and mechanism of action and blah blah sciencey blah and he felt it was plausible.  We decided I would try it next cycle because if it worked that would be awesome, and if it didn't, a few doses of Claritin in my system would be no big deal.

The night before my next Chemo treatment I took a Claritin just like the internet told me to.  The next day when I was having a check up with my oncologist and then getting checked in for Chemo I reported my bone pain every single one of the eleventy billion times people asked me for my information and about my symptoms.  You know what happened every. single. one. of those eleventy billion times?  Before I could even ask about the Claritin?  Doctor after doctor after nurse after nurse said "Oh, did you try the Claritin?".

Did I WHAT?!?!?!?  Are you freaking kidding me?  Did I try the goodness gracious Claritin?  NO!!!  Not until I had suffered for almost 2 WHOLE WEEKS because you told me to expect "flu like" symptoms and never breathed ONE FREAKING WORD about bone pain or difficulty breathing or Claritin!!!!  I had to GOOGLE IT.  Ugh.  So anyway, I tried it and it helps and thank you Jesus (and Google) because even without the bone pain and difficulty breathing I'm just barely getting by.

You know how people say that addicts have to hit rock bottom in order to admit they are powerless to control their situation?  Well, apparently biology deniers have to hit rock bottom before they will admit that cancer makes them sick and that having cancer and a newborn makes them sick and exhausted.  This week I hit rock bottom.  That's especially pathetic because I have help.  My sister was there everyday and night helping out so much, but a lot of the time I would make her sit there holding the baby watching me do stuff she was there to help me with.  How ungrateful and prideful is that?

All of my denying that I was sick and needing A LOT more rest and A LOT more help ended up with me having the WORST DAY EVER.  You guys, I got a speeding ticket and hit my sister's car with my van.   IN THE SAME DAY.  You know why?  Because I was deliriously exhausted from trying to pretend that going through Chemo and having a newborn weren't draining.  I was basically drunk without the drinking.  I had no business driving but I did anyway because I wouldn't admit that I couldn't.  The next day I ended up back at the hospital with a fever because I didn't take care of myself.  To sum it up, I let my stubbornness and pride put me and the general public in danger.  I'm so thick that that's what it takes for me to admit that cancer makes me sick.

I didn't want to write this post.  I'm glad I did though because it turns out I'm a mental neat freak.  Did you read Jennifer Fulwiler's awesome post about mental neat freaks?  How does she do it folks?  So insightful.  Anyway, that's definitely me and writing this out helps me clear out my mental clutter.  My actual house will never look like a neat freak lives here, but I definitely have OCD when it comes to my thoughts and emotions.  The general mental load of 6 kids and a husband and a dog and a household requires regular mental housekeeping.  Add in a kajillion doctor's appointments and a newborn and Chemo brain and now school and homeschool and kids activities starting back up for fall and I feel like I woke up one morning in an episode of Hoarders in my brain.  I'm also glad I wrote it because if other cancer patients, especially Moms, ever read this blog I want them to read that cancer makes you sick and it's hard so they'll know it's ok to be struggling.

You hear a lot about "battling cancer" and "fighting cancer" and I understand what people mean, but that can be a lot of pressure on a patient.  A lot of the "fighting" and "battling" looks and feels like doing nothing.  It's hard to reconcile all that brawling everyone's talking about with laying down and sleeping and watching Downton Abbey reruns and reading blogs but that's really what it is.  Sometimes the battle is really just the battle to sit down and let someone else do the dishes or pack the lunches.  Sometimes the battle is telling yourself to sit down and accept help graciously.

Finally, I'm glad I wrote this because I needed to out myself because this morning I woke up feeling well enough to write and I started back in on the denying and making plans to do things I cannot afford to do.  I have cancer.  I am sick.  Cancer makes me sick no matter how hard I try to deny it.

Hi, my name is Nella and cancer makes me sick.